Wednesday, March 23, 2011
Its been almost 4 weeks since Ellie started at CPEC. Alot of friends and family have been asking;
"Is Ellie enjoying it?"
"Have you noticed improvements with her?"
To be honest if Ellie could talk, I dont think that Ellie would describe it as enjoyable right now. It is bloody hard!!! Physically hard for Ellie. Mentally and emotionally hard for me.
Yes I can see how that in the long term, what we are doing at CPEC will help Ellie, make her stronger, make her understand how to move and use her body and hopefully help her communicate. So yes there are positives, they will come with time.
But for now both Ellie and I come home exhausted. One of the hardest parts is when we are doing something physically hard with Ellie, and she crys. I do try and push her a little bit, as I dont want her to think that if she crys, that immediately we will stop. But.... How hard do you push her? As a mother it is very hard to push your child to benefit them, when they are crying...
However that aside... the therapists are lovely and unbelievably helpful and the other mums so lovely... I get a real buzz when we all celebrate a childs success, no matter how small.
Here are some photos of Ellie enjoying play time & lunch at CPEC.
Posted by Melissa Young at 2:34 PM
Friday, March 11, 2011
Yesterday we had an appointment with Ellies eye surgeon. This appointment was booked as the specialist that makes Ellies glass eye, doesnt think that we could put a bigger glass eye in Ellies right eye socket. Even though its been 6 months since her last mould and new glass eye. You just cant put a bigger glass eye in and expect that it will stay in, if we put something in there that is too big, it wont stay in. We need to make room for a bigger glass eye.
Ellies eye surgeon measured both Ellies eyes. Yes, her right eye socket has grown. Considering when she was first born there was virtually no room in her right eye socket. However, the only way that we are really going to get Ellies right eye socket to expand, is if there is something in there expanding it.
At the moment Ellie has a 12mm orbital implant in her right eye socket. This is something that was placed in back in February 2009 and is still in there. Ellie also had a expander put in, November 2009. This stayed in for 4 weeks, and her eye lid was stitched closed.
After our appointment yesterday with Ellies eye surgeon, his plan is to remove the 12mm orbital implant, and put a bigger one in. With the view to also put another self expanding hydrophilic expander in for 4 weeks. The purpose of all this is to help Ellies right eye socket grow.
We are now waiting to hear of a surgery date.
Posted by Melissa Young at 1:02 PM
Tuesday, March 8, 2011
Ellie has new hearing aids. These are more powerfull than her last ones... which in turn will help her hear more. Fantastic I hear you say!!!
Yes the fact that they will help Ellie hear better is great... However apparently more powerfull hearing aids, means that the hearing aids have to be bigger. The bigger hearing aids are not a problem. When you have a child that needs a glass eye, AFO's, leg wraps etc, you get used to all the "extra things" your child needs.
The problem is that bigger hearing aids mean they do not stay totally put behind Ellies ears. As Ellie is still not sitting and mainly on the floor, and does not stop rolling around. This means that the hearing aids can come loose from behind her ears making it easier for her to remove. The solution that we have been given for this is ..... Double sided tape!!! I was horrified when I was told this. I dont mind my daughter having to have a glass eye, hearing aids or AFO's but the thought of having to put double sided tape on behind her ears... I really dont like. Not only does it not pull at her hair, but it looks like it is making her skin dry
The second thing about the new hearing aids is that when Ellie leans on them (which she does alot as she moves around on the floor) they SQEAUL....!! This drives me insane, and I can only imagine that it cant be too nice for Ellie.
I expressed my concern about this to the audiologist, however he stated that as Ellie needed more powerfull hearing aids.... more powerfull means bigger.... Are you serious??!!??!!
What I dont get that in this day and age, with the advancement of technology, that a child as little as Ellie (and Im sure there are smaller kiddies than Ellie that need hearing aids) have to put up with squealing hearing aids and double sided tape....!!
Ok vent over...!! We have a appointment in 3 weeks time, so I am going to give her hearing aids a really good go between now and then... as yes they are making a difference, I do see her respond a bit more.
But I was thinking... the hearing aids are obtained through a government funded business that provide hearing aids free of charge to children and pensioners. Maybe these are the only hearing aids that the goverment will fund?? Maybe there are other smaller hearing aid options out there but not funded by the government as they are to $$$
Hmmm just a thought... Might need to do some research as I am not keen on "double sided" taping Ellie every day
Posted by Melissa Young at 1:34 PM